I first learned of my HIV status in 1994. One of the biggest challenges that I faced upon discovering my status was that of the repercussions for my son. After I found out that I was positive, I immediately had to get my son tested. He ended up participating in a test study on males at age 5 and became eligible for the best medication on the market. For that, I am very grateful to Ryan White. Besides this opportunity that saved my son, Ryan White has been a tool for me to be able to pay my rent because I haven’t been able to work much since my diagnosis. After I was pulled from Medicaid, Ryan White paid Cobra premiums. I consider Ryan White my “stand strong point,” especially when I first embarked on this difficult journey with HIV. Sadly, having been involved with Ryan White legislation and other HIV-related resources in the South, I can just as easily see how the budget would eventually be completely stripped away.
When I first began my advocacy training, I kept hearing a great deal about Ryan White, but mostly because people didn’t really seem to understand how it worked. Over and over again, I heard the question: What is Ryan White? After I had sufficiently educated myself, I was able to attend my first advocacy conference in 1999 and speak about how my own family found out about my HIV status. At this and other conferences, I’ve discovered that a lot of women don’t really understand what Ryan White can offer them. I was once referred to a woman because she too had a son who was born HIV positive. Throughout her many visits to the doctor, she was constantly questioned by her practitioner about how exactly she was taking care of her son. Although she always does her best, she and other new mothers have found that many of their children’s medical needs aren’t quite fully met. Many people who have moved from New York, for instance, expect that the Ryan White money they received from their home state to carry over with them, but this is often not the case. Although I consider myself one of the lucky ones in terms of accessing Ryan White benefits, I am amazed by how many people still try to tear us down. My son is not as comfortable as I am in discussing his HIV status and for good reason. Just a few years ago, when he had to go to hospital, for example, he was disrespectfully asked about his HIV contraction even though his visit had nothing to do with his status. How am I supposed to be effective in getting my son the medical treatment he needs if everyone keeps tearing him down? I am passionate about Ryan White because I don’t want anyone to be violated like that.
I am an active advocate for Positive Voices in South Carolina and I have, in fact, talked to legislators about Ryan White. I have found that some are even unaware about the program’s specifics, let alone its wide impact. I’ve been all the way to Capitol Hill to talk to some individuals who didn’t even know the reason that I had shown up there. At a dinner during that visit, I met a young man who was shocked to learn of my status when I told him that I was in town for the Ryan White Conference. Needless to say, I told the man off. Despite the unwelcoming atmosphere that I encountered there, when I returned home to Columbia, I was pleased to find that they had reauthorized the Ryan White Care Act. I knew then that my efforts were at least somewhat worthwhile.
Another worthwhile cause is that of ensuring that HIV positive children like my son are able to get both the physical and mental support that they need. Many women also consult me when they do not know how to handle their child’s HIV status, which creates further stigma for the child. I think the problem is that there are far too few resources for women. Women really do need to be counted in. I am happy to see the emergence of new medication that is able to protect and help people like myself lead “normal” lives if we continue to regularly use it and attend our appointments. I feel that both legislators and “Average Joe’s” alike are uneducated and misinformed about all of the opportunities out there. I have personally had some great experiences with Ryan White but still think that more time and energy should be invested in women’s care and women’s issues, a reality that can only be achieved if Ryan White funding were expanded.
Take action now!
- Tell your legislators to continue to support the Ryan White program.
- Do you live in a state that has not expanded Medicaid? Let your legislators know how important Medicaid expansion is to your state.
- Check out advocacy tools and resources for Ryan White in South Carolina.
Co-sponsors: AIDS United, Southern AIDS Strategy Initiative, Southern AIDS Coalition, Center for Health Law and Policy Innovation at Harvard Law School, HIVHealthReform.org, HIV Prevention Justice Alliance, and the AIDS Foundation of Chicago.
This campaign has been made possible by the generous support of the Elton John AIDS Foundation.
Category: Ryan White. Real Lives.